Field Testing of the Preliminary Version of the Digital Health Literacy Instrument (Lisane) for Adults Living With a Chronic Disease
Main Article Content
Abstract
Introduction: The use of digital health devices (e-health) would improve certain patient’s clinical outcomes. Proposing effective “online” interventions to improve patients’ adaptation to chronic conditions requires a validated measure of digital health literacy. The “Lisane” self-report measure was developed and validated by experts.
Objectives: This article describes the field-testing of the preliminary version of the tool, more specifically the non-response rate, ceiling and floor effects, item redundancy and the preliminary assessment of its internal consistency.
Method: The Lisane tool, consisting of 14 items divided into five domains (e-literacy, reliability of information on the Internet, relevance of information to personal health, protection of privacy, empowerment), was applied to a convenience sample (29 participants) recruited in Quebec (patient communities) and Switzerland (clinical setting). The non-response rate and the ceiling and floor effects were evaluated. Item redundancy was described for exploratory purposes. Internal consistency was assessed using Cronbach's alpha coefficient.
Results: The rate of missing results > 15% and a redundancy (r = 0.94, p<0.05) on power to act’s items were noted. A floor effect was identified. Cronbach’s alpha was α= 0.90, 95% CI [0.78 – 1.03].
Discussion and Conclusion: The field test of the Lisane tool has limitations such as a ceiling effect and the indication of redundancy in certain items, but good preliminary evidence of internal consistency. Continued analysis of its psychometric properties (validity, reliability) is necessary.
Article Details
This work is licensed under a Creative Commons Attribution 4.0 International License.
Authors hold the copyright on their papers without restrictions and retain it without restrictions after publication of the papers on the journal’s website.
References
Agence de la santé publique du Canada. (2019, 9 décembre). Prévalence des maladies chroniques chez les adultes canadiens. Gouvernement du Canada. https://www.canada.ca/fr/sante-publique/services/maladies-chroniques/prevalance-adultes-canadiens-infographie-2019.html
Akinosun, A. S., Polson, R., Diaz-Skeete, Y., De Kock, J. H., Carragher, L., Leslie, S., Grindle, M. et Gorely, T. (2021). Digital Technology Interventions for Risk Factor Modification in Patients With Cardiovascular Disease: Systematic Review and Meta-analysis. JMIR mHealth and uHealth, 9(3), e21061. https://doi.org/10.2196/21061
American Educational Research Association (AERA), American Psychological Association (APA) et National Council on Measurement in Education (NCME). (2014). Standards for Educational and Psychological Testing. AERA. https://www.testingstandards.net/uploads/7/6/6/4/76643089/standards_2014edition.pdf
Aujoulat, I. (2007). L’empowerment des patients atteints de maladie chronique. Des processus multiples : auto-détermination, auto-efficacité, sécurité et cohérence identitaire [thèse de doctorat, Université catholique de Louvain]. DIAL. https://www.uclouvain.be/cps/ucl/doc/reso/documents/THESEaujoulat-BibliothequeUCL-Version2.pdf
Barr, P. J. et Elwyn, G. (2016). Measurement challenges in shared decision making: putting the 'patient' in patient-reported measures. Health expectations : an international journal of public participation in health care and health policy, 19(5), 993–1001. https://doi.org/10.1111/hex.12380
Chaniaud, N., Sagnier, C. et Loup-Escande, E. (2022). Translation and Validation Study of the French Version of the eHealth Literacy Scale: Web-Based Survey on a Student Population. JMIR Formative Research, 6(8), e36777. https://doi.org/10.2196/36777
Chudyk, A. M., Horrill, T., Waldman, C., Demczuk, L., Shimmin, C., Stoddard, R., Hickes, S. et Schultz, A. S. H. (2022). Scoping review of models and frameworks of patient engagement in health services research. BMJ Open, 12(8), e063507. https://doi.org/10.1136/bmjopen-2022-063507
Commission to the European Parliament, the European Council, the Council, the European Economic and Social Committee and the Committee of the Regions. (2018, 25 avril). On enabling the digital transformation of health and care in the digital single market: Empowering citizens and building a healthier society (COM(2018) 233 final). European Commission. https://digital-strategy.ec.europa.eu/en/library/communication-enabling-digital-transformation-health-and-care-digital-single-market-empowering
Cutcliffe, J. R. et McKenna, H. P. (dir.). (2005). The essential concepts of nursing: building blocks for practice. Elsevier/Churchill Livingstone.
de Vet, H. C. W., Terwee, C. B., Mokkink, L. B. et Knol, D. L. (2011). Measurement in Medicine: A Practical Guide. Cambridge University Press.
DeFrank, J. T., Barclay, C., Sheridan, S., Brewer, N. T., Gilliam, M., Moon, A. M., Rearick, W., Ziemer, C. et Harris, R. (2015). The psychological harms of screening: the evidence we have versus the evidence we need. Journal of general internal medicine, 30(2), 242–248. https://doi.org/10.1007/s11606-014-2996-5
Délétroz, C. (2024). Développement et validation de la première version d’un instrument de mesure de la littératie en santé numérique chez l’adulte présentant au moins une maladie chronique [thèse de doctorat inédite]. Université Laval.
Délétroz, C., Bou-Malhab, P., Bodenmann, P. et Gagnon, M.-P. (2022). Les spécificités de la littératie en santé numérique des patients à l’heure d’Internet et du numérique. Dans Bodenmann, P., Jackson, Y., Vu, F. et Wolff, H. (dir.), Vulnérabilités, diversités et équité en santé (p. 75–82). Médecine & Hygiène.
Délétroz, C., Canepa Allen, M., Sasseville, M., Rouquette, A., Bodenmann, P. et Gagnon, M.-P. (2022). Revue systématique des mesures de littératie en santé numérique pour les patients : résultats préliminaires. Science of Nursing and Health Practices / Science infirmière et pratiques en santé, 5(Supplément), 15. https://doi.org/10.7202/1093075ar
Délétroz, C., Canepa Allen, M., Yameogo, A. R., Sasseville, M., Rouquette, A., Bodenmann, P. et Gagnon, M.-P. (2023). Systematic review of the measurement properties of patient-reported outcome measures (PROMs) of eHealth literacy in adult populations. BMJ Open Prépublication. https://doi.org/10.21203/rs.3.rs-3192406/v1
Délétroz, C., Del Grande, C., Bodenmann, P., Gagnon M.-P. et Sasseville, M. (2023). Development of a patient-reported outcome measure of digital health literacy for chronic patients: results of a French international online Delphi study. BMC Nursing, 22(1), 476. https://doi.org/10.1186/s12912-023-01633-x
DeWalt, D. A., Rothrock, N., Yount, S., Stone, A. A. et PROMIS Cooperative Group. (2007). Evaluation of item candidates: the PROMIS qualitative item review. Medical care, 45(5 Suppl 1), S12–S21. https://doi.org/10.1097/01.mlr.0000254567.79743.e2
Diviani, N., van den Putte, B., Giani, S. et van Weert, J. C. (2015). Low health literacy and evaluation of online health information: a systematic review of the literature. Journal of medical Internet research, 17(5), e112. https://doi.org/10.2196/jmir.4018
Ellis, L. A., Sarkies, M., Churruca, K., Dammery, G., Meulenbroeks, I., Smith, C. L., Pomare, C., Mahmoud, Z., Zurynski, Y. et Braithwaite, J. (2022). The Science of Learning Health Systems: Scoping Review of Empirical Research. JMIR medical informatics, 10(2), e34907. https://doi.org/10.2196/34907
Fondation des maladies du cœur du Canada. (2021). CSBP-F20-Virtual Care Decision Framework. https://www.heartandstroke.ca/-/media/1-stroke-best-practices/csbp-f20-virtualcaredecisionframework-en.pdf?rev=9db7990386364a1b8253401c0313d634
Forsythe, L. P., Carman, K. L., Szydlowski, V., Fayish, L., Davidson, L., Hickam, D. H., Hall, C., Bhat, G., Neu, D., Stewart, L., Jalowsky, M., Aronson, N. et Anyanwu, C. U. (2019). Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute. Health affairs (Project Hope), 38(3), 359–367. https://doi.org/10.1377/hlthaff.2018.05067
Gagnon, J. (2012). Empowerment. Dans M. Formarier et Jovic L. (dir.), Les concepts en sciences infirmières (2e éd., p. 172–175). Association de Recherche en Soins Infirmiers.
Gagnon, M. P., Ndiaye, M. A., Larouche, A., Chabot, G., Chabot, C., Buyl, R., Fortin, J. P., Giguère, A., Leblanc, A., Légaré, F., Motulsky, A., Sicotte, C., Witteman, H. O., Kavanagh, E., Lépinay, F., Roberge, J., Délétroz, C. et Abbasgholizadeh-Rahimi, S.(2019). Optimising patient active role with a user-centred eHealth platform (CONCERTO+) in chronic diseases management: a study protocol for a pilot cluster randomised controlled trial. BMJ open, 9(4), e028554. https://doi.org/10.1136/bmjopen-2018-028554
Gagnon, M. P., Tantchou Dipankui, M., Poder, T. G., Payne-Gagnon, J., Mbemba, G. et Beretta, V. (2021). Patient and public involvement in health technology assessment: update of a systematic review of international experiences. International journal of technology assessment in health care, 37, e36. https://doi.org/10.1017/S0266462321000064
Gram, E. G., Á Rogvi, J., Heiberg Agerbeck, A., Martiny, F., Bie, A. K. L. et Brodersen, J. B. (2023). Methodological Quality of PROMs in Psychosocial Consequences of Colorectal Cancer Screening: A Systematic Review. Patient related outcome measures, 14, 31–47. https://doi.org/10.2147/PROM.S394247
Griebel, L., Enwald, H., Gilstad, H., Pohl, A. L., Moreland, J. et Sedlmayr, M. (2018). eHealth literacy research-Quo vadis?. Informatics for health & social care, 43(4), 427–442. https://doi.org/10.1080/17538157.2017.1364247
Guillemin, F., Brainçon, S. et Pourel, J. (1991). Mesure de la capacité fonctionnelle dans la polyarthrite rhumatoïde : adaptation française du Health Assessment Questionnaire (HAQ). Revue du rhumatisme et des maladies ostéo-articulaires, 58(6), 459–465.
Hansen, C. F., Jensen, J., Brodersen, J., Siersma, V., Comins, J. D. et Krogsgaard, M. R. (2021). Are adequate PROMs used as outcomes in randomized controlled trials? an analysis of 54 trials. Scandinavian journal of medicine & science in sports, 31(5), 972–981. https://doi.org/10.1111/sms.13896
Harris, P. A., Taylor, R., Minor, B. L., Elliott, V., Fernandez, M., O'Neal, L., McLeod, L., Delacqua, G., Delacqua, F., Kirby, J., Duda, S. N. et REDCap Consortium (2019). The REDCap consortium: Building an international community of software platform partners. Journal of biomedical informatics, 95, 103208. https://doi.org/10.1016/j.jbi.2019.103208
Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N. et Conde, J. G. (2009). Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. Journal of biomedical informatics, 42(2), 377–381. https://doi.org/10.1016/j.jbi.2008.08.010
Howie, P. et Bagnall, R. (2017). A methodology for field-testing concepts through expert practitioner engagement. International Journal of Social Research Methodology, 20(4), 401–410. https://doi.org/10.1080/13645579.2016.1183979
Janjua, S., Banchoff, E., Threapleton, C. J., Prigmore, S., Fletcher, J. et Disler, R. T. (2021). Digital interventions for the management of chronic obstructive pulmonary disease. The Cochrane database of systematic reviews, 4(4), CD013246. https://doi.org/10.1002/14651858.CD013246.pub2
Karnoe, A. et Kayser, L. (2015). How is eHealth literacy measured and what do the measurements tell us? A systematic review. Knowledge Management & E-Learning: An International Journal, 7(4), 576–600. https://doi.org/10.34105/j.kmel.2015.07.038
Karnoe, A., Furstrand, D., Christensen, K. B., Norgaard, O. et Kayser, L. (2018). Assessing Competencies Needed to Engage With Digital Health Services: Development of the eHealth Literacy Assessment Toolkit. Journal of medical Internet research, 20(5), e178. https://doi.org/10.2196/jmir.8347
Kickbusch, I., Pelikan, J. M., Apfel, F. et Tsouros, A. D. (2013). Health literacy: The solid facts. World Health Organization. Regional Office for Europe. https://apps.who.int/iris/handle/10665/326432
Lee, A. Y. L., Wong, A. K. C., Hung, T. T. M., Yan, J. et Yang, S. (2022). Nurse-led Telehealth Intervention for Rehabilitation (Telerehabilitation) Among Community-Dwelling Patients With Chronic Diseases: Systematic Review and Meta-analysis. Journal of medical Internet research, 24(11), e40364. https://doi.org/10.2196/40364
Lee, S. E., Farzal, Z., Kimple, A. J., Moreno-Luna, R., Senior, B. A., Thorp, B. D. et Ebert, C. S. (2022). Availability of Readable Online Spanish Rhinosinusitis Outcome Measures. Journal of clinical medicine, 11(24), 7364. https://doi.org/10.3390/jcm11247364
Lin, C. Y., Broström, A., Griffiths, M. D. et Pakpour, A. H. (2020). Psychometric Evaluation of the Persian eHealth Literacy Scale (eHEALS) Among Elder Iranians With Heart Failure. Evaluation & the health professions, 43(4), 222–229. https://doi.org/10.1177/0163278719827997
Martz, E. et Livneh, H. (2007). Coping with Chronic Illness and Disability: Theoretical, Empirical, and Clinical Aspects. Springer. https://doi.org/10.1007/978-0-387-48670-3
Measuring Population and Organizational Health Literacy (M-POHL). (s. d.). Publications. https://m-pohl.net/HLS_Project_Publications_Presentations
Mokkink, L. B., Prinsen, C. A. C., Patrick, D. L., Alonso, J., Bouter, L. M., de Vet, H. C. W. et Terwee, C. B. (2018, février). COSMIN methodology for systematic reviews of Patient-Reported Outcome Measures (PROMs): User manual. Amsterdam Public Health research Institute. https://cosmin.nl/wp-content/uploads/COSMIN-syst-review-for-PROMs-manual_version-1_feb-2018.pdf
Mokkink, L. B., Terwee, C. B., Patrick, D. L., Alonso, J., Stratford, P. W., Knol, D. L., Bouter, L. M. et de Vet, H. C. (2010). The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. Journal of clinical epidemiology, 63(7), 737–745. https://doi.org/10.1016/j.jclinepi.2010.02.006
Moreau, A. C., Savriama, S. et Major, F. A. (2013). Littératie en santé : conduites et gestion de soins chez les personnes ayant des compétences réduites en littératie. Globe, 16(1), 91–105. https://doi.org/10.7202/1018179ar
Neter, E. et Brainin, E. (2012). eHealth literacy: extending the digital divide to the realm of health information. Journal of medical Internet research, 14(1), e19. https://doi.org/10.2196/jmir.1619
Neter, E. et Brainin, E. (2019). Association between health literacy, eHealth literacy, and health outcomes among patients with long-term conditions: A systematic review. European Psychologist, 24(1), 68–81. https://doi.org/10.1027/1016-9040/a000350
Norgaard, O., Furstrand, D., Klokker, L., Karnoe, A., Batterham, R., Kayser, L. et Osborne, R. H. (2015). The e-health literacy framework: A conceptual framework for characterizing e-health users and their interaction with e-health systems. Knowledge Management & E-Learning, 7(4), 522–540. https://doi.org/10.34105/j.kmel.2015.07.035
Norman, C. D. et Skinner, H. A. (2006a). eHealth Literacy: Essential Skills for Consumer Health in a Networked World. Journal of medical Internet research, 8(2), e9. https://doi.org/10.2196/jmir.8.2.e9
Norman, C. D. et Skinner, H. A. (2006b). eHEALS: The eHealth Literacy Scale. Journal of medical Internet research, 8(4), e27. https://doi.org/10.2196/jmir.8.4.e27
Office fédéral de la statistique. (s.d.). Enquête suisse sur la santé. https://www.bfs.admin.ch/bfs/fr/home/statistiques/sante/enquetes/sgb.html
Oliffe, J. L., Rossnagel, E., Kelly, M. T., Bottorff, J. L., Seaton, C. et Darroch, F. (2020). Men's health literacy: a review and recommendations. Health promotion international, 35(5), 1037–1051. https://doi.org/10.1093/heapro/daz077
Paige, S. R., Stellefson, M., Krieger, J. L., Miller, M. D., Cheong, J. et Anderson-Lewis, C. (2019). Transactional eHealth Literacy: Developing and Testing a Multi-Dimensional Instrument. Journal of health communication, 24(10), 737–748. https://doi.org/10.1080/10810730.2019.1666940
Petkovic, J., Epstein, J., Buchbinder, R., Welch, V., Rader, T., Lyddiatt, A., Clerehan, R., Christensen, R., Boonen, A., Goel, N., Maxwell, L. J., Toupin-April, K., De Wit, M., Barton, J., Flurey, C., Jull, J., Barnabe, C., Sreih, A. G., Campbell, W., Pohl, C., … Guillemin, F. (2015). Toward Ensuring Health Equity: Readability and Cultural Equivalence of OMERACT Patient-reported Outcome Measures. The Journal of rheumatology, 42(12), 2448–2459. https://doi.org/10.3899/jrheum.141168
Petrič, G., Atanasova, S. et Kamin, T. (2017). Ill Literates or Illiterates? Investigating the eHealth Literacy of Users of Online Health Communities. Journal of medical Internet research, 19(10), e331. https://doi.org/10.2196/jmir.7372
Prinsen, C. A., Vohra, S., Rose, M. R., Boers, M., Tugwell, P., Clarke, M., Williamson, P. R. et Terwee, C. B. (2016). How to select outcome measurement instruments for outcomes included in a "Core Outcome Set" - a practical guideline. Trials, 17(1), 449. https://doi.org/10.1186/s13063-016-1555-2
Rouquette, A. et Falissard, B. (2011). Sample size requirements for the internal validation of psychiatric scales. International journal of methods in psychiatric research, 20(4), 235–249. http://doi.org/10.1002/mpr.352
Roy, C. et Andrews H. (2008). The Roy adaptation model (3e éd.). Pearson.
Roy, C. (2013). Generating Middle Range Theory: From Evidence to Practice. Springer Publishing Company.
Ruel, J., Allaire, C., Moreau, A. C., Kassi, B., Brumagne, A., Delample, A., Grisard, C. et Pinto da Silva, F. (2018). Communiquer pour tous. Guide pour une information accessible. Santé publique France.
Rutherford, C., King, M. T., Smith, D. P., Costa, D. S., Tait, M. A., Patel, M. I. et NMIBC-SI Working Group (2017). Psychometric Evaluation of a Patient-Reported Symptom Index for Nonmuscle Invasive Bladder Cancer: Field Testing Protocol. JMIR research protocols, 6(11), e216. https://doi.org/10.2196/resprot.8761
Saout, C. (2022). La démocratie en santé. Comprendre et s’engager. Presses de l’EHESP. https://www.presses.ehesp.fr/wp-content/uploads/2022/05/978-2-8109-1028-1.pdf
Shiferaw K. B. (2020). Validation of the Ethiopian Version of eHealth Literacy Scale (ET-eHEALS) in a Population with Chronic Disease. Risk management and healthcare policy, 13, 465–471. https://doi.org/10.2147/RMHP.S240829
Simpson, R. M., Knowles, E. et O’Cathain, A. (2020). Health literacy levels of British adults: A cross-sectional survey using two domains of the Health Literacy Questionnaire (HLQ). BMC Public Health, 20, 1819. https://doi.org/10.1186/s12889-020-09727-w
Sørensen, K., Van den Broucke, S., Fullam, J., Doyle, G., Pelikan, J., Slonska, Z., Brand, H. et (HLS-EU) Consortium Health Literacy Project European. (2012). Health literacy and public health: a systematic review and integration of definitions and models. BMC public health, 12, 80. https://doi.org/10.1186/1471-2458-12-80
StataCorp LLC. (2019). Stata 16 [logiciel]. StataCorp LLC. https://www.stata.com/stata16/
Terwee, C. B., Bot, S. D., de Boer, M. R., van der Windt, D. A., Knol, D. L., Dekker, J., Bouter, L. M. et de Vet, H. C. (2007). Quality criteria were proposed for measurement properties of health status questionnaires. Journal of clinical epidemiology, 60(1), 34–42. https://doi.org/10.1016/j.jclinepi.2006.03.012
Terwee, C. B., Prinsen, C. A. C., Chiarotto, A., De Vet, H. C. W., Bouter, L. M., Alonso, J., Westermann, M. J., Patrick, D. J. et Mokkink, L. B. (2018). COSMIN methodology for assessing the content validity of PROMs. User manual. Amsterdam VU University Medical Center. https://www.cosmin.nl/wp-content/uploads/COSMIN-methodology-for-content-validity-user-manual-v1.pdf
Terwee, C. B., Prinsen, C. A. C., Chiarotto, A., Westerman, M. J., Patrick, D. L., Alonso, J., Bouter, L. M., de Vet, H. C. W. et Mokkink, L. B. (2018). COSMIN methodology for evaluating the content validity of patient-reported outcome measures: a Delphi study. Quality of life research: an international journal of quality of life aspects of treatment, care and rehabilitation, 27(5), 1159–1170. https://doi.org/10.1007/s11136-018-1829-0
The HLS19 Consortium of the WHO Action Network M-POHL. (2021, December). International Report on the Methodology, Results, and Recommendations of the European Health Literacy Population Survey 2019-2021 (HLS19) of M-POHL. Austrian National Public Health Institute. https://m-pohl.net/sites/m-pohl.net/files/inline-files/HLS19%20International%20Report.pdf
van der Heide, I., Wang, J., Droomers, M., Spreeuwenberg, P., Rademakers, J. et Uiters, E. (2013). The Relationship Between Health, Education, and Health Literacy: Results From the Dutch Adult Literacy and Life Skills Survey. Journal of Health Communication, 18(sup1), 172–184. https://doi.org/10.1080/10810730.2013.825668
van der Vaart, R., Drossaert, C. H., de Heus, M., Taal, E. et van de Laar, M. A. (2013). Measuring actual eHealth literacy among patients with rheumatic diseases: a qualitative analysis of problems encountered using Health 1.0 and Health 2.0 applications. Journal of medical Internet research, 15(2), e27. https://doi.org/10.2196/jmir.2428
van der Vaart, R. et Drossaert, C. (2017). Development of the Digital Health Literacy Instrument: Measuring a Broad Spectrum of Health 1.0 and Health 2.0 Skills. Journal of medical Internet research, 19(1), e27. https://doi.org/10.2196/jmir.6709
van der Vaart, R., van Deursen, A. J., Drossaert, C. H., Taal, E., van Dijk, J. A. et van de Laar, M. A. (2011). Does the eHealth Literacy Scale (eHEALS) measure what it intends to measure? Validation of a Dutch version of the eHEALS in two adult populations. Journal of medical Internet research, 13(4), e86. https://doi.org/10.2196/jmir.1840
Vanderbilt University Medical Center. (s.d.). REDCap [logiciel]. The REDCap consortium. https://projectredcap.org/
Vésteinsdóttir, V., Joinson, A., Reips, U. D., Danielsdottir, H. B., Thorarinsdottir, E. A. et Thorsdottir, F. (2019). Questions on honest responding. Behavior research methods, 51(2), 811–825. https://doi.org/10.3758/s13428-018-1121-9
Walston, J., Redford, J. et Bhatt, M. P. (2017, avril). Workshop on Survey Methods in Education Research: Facilitator’s guidebook and resources (publication n° REL 2017–214). U.S. Department of Education, Institute of Education Sciences, National Center for Education Evaluation and Regional Assistance, Regional Educational Laboratory Midwest. https://files.eric.ed.gov/fulltext/ED573681.pdf
Wiering, B., de Boer, D. et Delnoij, D. (2017). Patient involvement in the development of patient-reported outcome measures: a scoping review. Health expectations: an international journal of public participation in health care and health policy, 20(1), 11–23. https://doi.org/10.1111/hex.12442
World Health Organization. (2021). Health Promotion Glossary of Terms 2021 (publication n° WHO/HPR/HEP/98.1). https://iris.who.int/bitstream/handle/10665/350161/9789240038349-eng.pdf?sequence=1
World Health Organization. (2023, 16 septembre). Noncommunicable diseases. https://www.who.int/news-room/fact-sheets/detail/noncommunicable-diseases